Investigating service user Investigating service user ethical priorities in ethical priorities in

psychological researchpsychological research

Rachael CarrickRachael Carrick

What makes service users What makes service users feel they have been treated feel they have been treated properly when researchers properly when researchers are looking at how people are looking at how people

tick?tick?L-T MerwoodL-T Merwood

RECs are responsible for acting RECs are responsible for acting primarily in the interest of potential primarily in the interest of potential research participants and concerned research participants and concerned communitiescommunities

Central Office for Research Ethics Central Office for Research Ethics Committees, 2001, p. 6Committees, 2001, p. 6

Official committees decide whether or Official committees decide whether or not particular research projects can not particular research projects can go ahead.go ahead.

The most important thing they must The most important thing they must take into account is the good of take into account is the good of people who take part and the good of people who take part and the good of people the research could affect.people the research could affect.

Explaining termsExplaining terms What words What words meanmean

Service UserService User Ethical prioritiesEthical priorities Psychological Psychological

ResearchResearch

Service UserService User Being treated Being treated

properlyproperly Finding out how Finding out how

people tickpeople tick

Images from CORECImages from COREC

What has been done beforeWhat has been done before

Experimental work around RECs

Psychological research ethics

User views on ethics

MethodologyMethodology ConsultationConsultation Nominal Group / Expert focus group …Nominal Group / Expert focus group … Online (or post) Delphi questionnaire, 17 Online (or post) Delphi questionnaire, 17

items, rated 1-7 importance + items, rated 1-7 importance +

commentscomments Round two DelphiRound two Delphi

average (median)average (median) agreement levels (high, medium, low)agreement levels (high, medium, low)

How it workedHow it worked

Starter groupStarter group

First questionnaireFirst questionnaire

Second questionnaireSecond questionnaire

ParticipantsParticipants ConsultationConsultation

3 service users knowledgeable about research3 service users knowledgeable about research

Nominal Group / Expert focus groupNominal Group / Expert focus group 6 service users, mixed but most mental health6 service users, mixed but most mental health

Delphi Delphi 92 service users, 71% female, 81% mental 92 service users, 71% female, 81% mental

healthhealth 58 service users, 72% female, 84% mental 58 service users, 72% female, 84% mental

healthhealth

Results Results

17 statements17 statements 9 reached consensus criteria 9 reached consensus criteria 4 didn’t quite4 didn’t quite 4 had substantial disagreement4 had substantial disagreement

Example statements from each areaExample statements from each area CommentsComments Median and agreement levelsMedian and agreement levels

Results Results People mostly agreed about half the People mostly agreed about half the

things on the questionnaire. They things on the questionnaire. They thought they were all very important.thought they were all very important.

On other things people had more On other things people had more different ideas about what was different ideas about what was important.important.

The most interesting things were The most interesting things were Things people disagreed about the mostThings people disagreed about the most The reasons people gave for their viewsThe reasons people gave for their views

People agreed that:People agreed that: Service users should help decide Service users should help decide

whether research projects are whether research projects are reasonable, respectful and fairreasonable, respectful and fair

Researchers should be up front with Researchers should be up front with people about what they are doingpeople about what they are doing

Research should be well planned so all Research should be well planned so all kinds of people can take part if they kinds of people can take part if they wantwant

If research upsets or unsettles people If research upsets or unsettles people they should be helped to get over itthey should be helped to get over it

People disagreed about:People disagreed about: Being paid! Being paid!

Whether researchers can ask Whether researchers can ask upsetting questionsupsetting questions

How involved services users should How involved services users should be in choosing what research is donebe in choosing what research is done

Where there was agreementWhere there was agreement Of the 9 statements reaching Of the 9 statements reaching

consensus all rated Very Importantconsensus all rated Very Important e.g RECs should have people on them e.g RECs should have people on them

to represent service user views to represent service user views Median 7; Range 5-7; IQR 0.00Median 7; Range 5-7; IQR 0.00 ThemesThemes

SUs provide a different and much needed perspective

If RECs are making decisions regarding SUs, SUs should be on them

Where there was some Where there was some disagreementdisagreement

Those statement that did not reach Those statement that did not reach consensus (4)consensus (4) There should be a good chance that There should be a good chance that

research can make a positive difference research can make a positive difference to people’s livesto people’s lives

Median 6.5; Range 1-7; IQR 2.0Median 6.5; Range 1-7; IQR 2.0 see quote...see quote...

Example comment:Example comment:

Although I think a major aim of research should be to identify knowledge that benefits people’s lives, to suggest all research should do this would be to deny some research might not show that e.g. some therapies don’t work but more importantly ‘box in’ researchers to do only what appears useful and prevent researchers proving/disproving care that might not yet be obvious but will be in the future. Researchers should be creative as well as practical. Katie

Where there was more Where there was more disagreementdisagreement

4 Statements including:4 Statements including:

Research should avoid asking questions Research should avoid asking questions that could upset participantsthat could upset participants

Median 3.0; Range 1-7; IQR 3.0Median 3.0; Range 1-7; IQR 3.0 See quotesSee quotes

Example comments:Example comments:

An upsetting question that is asked may cause discomfort for five minutes, an upsetting question that is not asked may cause discomfort for a lifetime - how can we be educated about what upsets people if we don’t ask and consult them?Lucy

People have the right to choose to do something that could be upsetting Emily

Broad themes across the Broad themes across the itemsitems

ChoiceChoice Balancing empowerment and protectionBalancing empowerment and protection

The similarities and differences The similarities and differences between research and therapybetween research and therapy The importance of relationshipThe importance of relationship Participants’ motivationsParticipants’ motivations

Service User understandings of the concept of science Tension between objectivity and relevance

Example comment:Example comment:

There seemed from my own experience to be a conflict between the scientific requirements of the trial, i.e. that all treatment plans in the trial should be comparable, and the importance of a treatment plan being tailor-made for an individual, e.g. I needed to talk at some length about the history of my condition in order to be able to build up trust with my practitioner. This was not possible within the constraints of the trial and was one reason why I decided to stop treatment within the trial and continue it outside. Chloe

ImplicationsImplications What next?What next?

RepresentativenesRepresentativeness of the samples of the sample

Timing of the Timing of the research – research – openness to SU openness to SU input input

DisseminationDissemination

Asking the right Asking the right peoplepeople

Being realistic Being realistic about what you about what you can get donecan get done

Letting people Letting people know what you know what you found outfound out

Why Delphi?Why Delphi?

What is Delphi?What is Delphi? FlexibleFlexible Consensus methodology appropriate Consensus methodology appropriate

in the area of ethicsin the area of ethics Allows collection of quantitative and Allows collection of quantitative and

qualitative informationqualitative information Allows the views of a large group to Allows the views of a large group to

be analysed without losing be analysed without losing opportunity for individual commentopportunity for individual comment